PCOS, no period for 10 months TTC

[Apat10]

Hi all,

First post here! I came off my pill in December to try for a baby and am STILL waiting for my first period to arrive. My GP has been great and despite me having normal bloods and a BMI on the low side of normal she sent me for an ultrasound and they diagnosed PCOS.

I've been on metformin since July (thankfully tolerating it well) but nothing has shifted yet...

I've been told to get back in touch in December when they will probably refer me to fertility.

I'm just struggling emotionally with all of the waiting around and am worried the referral might take ages too. I'm 31 which I know isn't ancient but it really feels like the clock is ticking...

I'm just wondering if anyone else has been here or has any words of wisdom or comfort, I'm just feeling really alone in this and dont know anyone else who has been here before. My husband is great but does feel a bit removed from the situation at the moment I think as we are both just waiting around for my body to start doing it's job properly!

Hi @Apat10

I'm sorry that you're in this difficult position. I also have PCOS and don't ovulate without assistance so relate to the "waiting for my body to work" thing!

One thing I did use that worked for me - not certain if I ovulated but definitely had a period for the first time in ages - was Agnus castus supplements. Disclaimer that obviously I'm not a doctor etc and please do your own research but I wanted to mention it in case it works for you.

For me, we did end up pursuing fertility treatment. We also had possible male factor issues which we found out about when we started treatment. I had 6 months of clomid which again made me ovulate but sadly didn't get pregnant, we eventually conceived via IVF and now in the middle of trying for number two after a couple of losses / failed transfers earlier this year.

It's a really tough process and for me I definitely find the waiting the hardest thing, it does feel like time is slipping! I don't know how much reassurance I can give, just wanted you to know you're not alone and it is possible to get through it. It can feel really isolating, I found it quite helpful watching vlogs on YouTube of people at similar stages in treatment I think just to feel less alone as my friends, whilst supportive, didn't really get how hard it was, and we didn't share widely with family.

Hello @Apat10 ,
You’re not alone! I’m in a very similar situation - stopped taking the pill in December and have had only one period since. I got diagnosed with PCOS in August. My GP referred me to a fertility clinic straight away, but waiting times in my area are insane, so I decided to go private. I’d try to push for a referral before the year is up if you can. If you’re not ovulating, it doesn’t make any sense to wait.
I’ve been taking myo inositol and Zita West’s supplements for a couple of months, not sure how effective they’re yet.
@Eggling Thank you so much for sharing your story, it gives me hope! At the moment it just feels like it’s never going to happen :(
The whole thing is so frustrating and isolating at times!

@Eggling and @WafflesNCream thanks so much for your replies, it really helps to know I'm not alone... I feel like such an anomaly at times. I catch myself being envious of people complaining about period pains thinking I'd just love to have some sort of cycle going on so I have a starting point!

You make a good point about waiting times... I think perhaps I need to ask my doctor to refer me now and I can keep going with the metformin while I wait. I think maybe she thinks she can't refer me until we've been trying for a year but surely the PCOS diagnosis should mean I can be referred more quickly?

I just want time to stop while it all works itself out! Feel so cross with myself for waiting until I was 30 before coming off the pill.

Sending all the luck to both of you!!

@Apat10 My feelings exactly! I wish I’d gone off the pill sooner, it seems like everyone gets off it months before they start ttc and I feel like I missed the memo!
Talk to your GP about the referral and if they refuse, maybe ask to see a gynaecologist or an endocrinologist. In my case the gynaecologist made a suggestion not to wait for a year and GP gave me a referral straight away.
Good luck x

Just to say that PCOS isn't diagnosed solely on an USS which shows multiple cysts in the ovaries. I did my research (medical) in PCOS and it is so commonly misdiagnosed. If your GP think you have PCOS, the current criteria is the Rotterdam Criteria - 2 out of 3 of the following: clinical or biochemical hyperandrogenism (hirsutism, male pattern balding, acne or raised androgens on bloods); oligo (less than 7 a year) or amenorrhoea (less than 2 periods a year); polycystic ovarian morphology on USS. There are other bloods we look at in the clinic which would not be routinely requested by your GP. Another common cause of irregular/absent periods in a young woman is functional amenorrhoea which has a different cause to PCOS but can present in a similar fashion. Try and get a referral to a specialist. Treatment of PCOS depends on what the patient is hoping to achieve - weight loss, reducing androgen levels, pregnancy etc

Thanks for this @NC3435 really helpful to hear from an expert! I'm aware of the criteria and do seem to meet is as I suffer with acne as well as the amenorrhea and polycystic presentation on USS unfortunately. I did wonder at first whether it might be a misdiagnosis since my bloods were fine and my BMI is on the lower end of healthy.

Part of me still hopes that my body is just taking a while to adapt to hormone changes since coming off the pill (I've been on it since I was 17) and that once I get my first period things will just settle down but I think that's wishful thinking!

I think requesting a referral to a specialist is definitely wise advice!

Did your bloods show high testosterone? If so, I got my periods back my taking flax seed oil tablets (1000mg). I also found inositol got them back too.

@Apat10 you’re certainly not alone in this. I came off the pill in February, periods returned quite regularly for five cycles and then disappeared and still waiting. Bloods have been ok but pointing towards pcos also. GP has been great, started metaformin last week and a referral for fertility made. So hoping period or referral appointment will come, I don’t know which one I want to come first!!

@WafflesNCream i missed that memo about coming off the pill sooner also!! I wish I had researched the effects of coming off the pill a bit more.

Unfortunately @WafflesNCream @Apat10 the nice guidelines is a year TTC even if there is a clear known issue and 2 years if no clear issue found. I have also been on the shitty side of this (also not ovulating). The supplements recommended to me were inofolic alpha from fertility family (recommended by fertility clinic) and Myo inositol (recommended on here)

@Sabbie40 Sorry, I hope you don't mind me asking after such a while but I am in a very similar situation and just wondering what happened/what your other symptoms were? I came off the pill last July, had 5 cycles as normal, 1 cycle 2 weeks late and then periods disappeared completely! It seems so odd as I thought if periods were affected by the pill, they wouldn't be so quick to come back. I had an USS nearly two months ago that showed polycystic ovaries and I was given norithisterone to "reset" my cycle but that was now 6 weeks ago and nothing seems to have returned. My bloods are normal, and I have no symptoms of PCOS except missing periods (but a very long history of normal periods before the pill) - so my GP wasn't sure if it was actually PCOS or not. Feel like I am waiting around, but not sure what for/how long!

@cbm7289 you can have PCO without having PCOS (and vice versa). Do a quick Google search for info, would add a link but seem to be having some issues doing that.

@cbm7289 sorry to hear you are going through this, it really is no fun just sitting around waiting. My GP referred me to the fertility clinic 11 months after I first came off the pill as I had still hadn't had any periods at all at that stage. The referral was super quick for me (luckily) and I was first seen in December, my period actually returned the week before that appointment.

I have had more periods since but with long 37 - 45ish day cycles. I am now on letrozole to try to regulate that, my first cycle made me ovulate but the second cycle didn't so now I am upping my dose.

I doubted at first whether the PCOS diagnosis was correct but it's been going on for long enough that I trust it now to be more than just pill withdrawal, I think I must have developed it while on the pill for many years.

My symptoms of hormone imbalance were crazy when I first came off the pill - for a few months I came out in hives every night at 10pm. I also had painful acne for a while on my jawline which had thankfully calmed down lots. I had hair loss too which was no fun either.

It's a wild ride really, still hoping that I'm still in the settling process and that things will calm down over time with or without the letrozole but who knows!

Hi @cbm7289 My GP believed I had pcos due to a number of factors; overweight, (I had put on a stone in weight after coming off the pill that February), facial hair and I had a high testosterone level in my blood results, but all other bloods results were normal. In my pre pill days, I had longer cycles, maybe round the 30-40 days but I had never skipped a period either.
Age was not on my side as I was 40 but I was very lucky I had a proactive GP. I did a lot of Google and Mumsnet searches into pcos at the time and I overhauled my diet completely. GP prescribed metformin in October, I had a “forced bleed” after 10 days on the metformin and then in November I had my first normal cycle/period. I was so relieved and so happy that month! I never got to investigate further as I was extremely fortunate and I fell pregnant in December and I am now 25 weeks pregnant.
I do remember the stress and worry at the time about my disappearing cycle and TTC. I really hope you get sorted soon.